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Wednesday, 27 May 2015

I'm sure that some of you saw this article about Juliette Beegle, the 15-year-old kicked off an United Airlines airplane with her family, ostensibly because she's autistic. (This article is another good one that covers the story, and the comments are very interesting.)

I say "ostensibly" because the message board discussion that I've been watching on this story has had people point out that the call to have the plane make an emergency landing and have Juliette Beegle and her family disembark may have been made for a neurotypical person too.

Let's take a look at Juliette Beegle's story.

Juliette Beegle's Story - The Basics

Juliette Beegle does not communicate using words, and her frustration levels can get high, especially if she hasn't eaten. On the day in question, she hadn't eaten before getting on the airplane, and didn't want to eat any of the snacks that her mother, Donna Beegle, had brought. Sensing that acting-out behaviour (I don't like the term "meltdown") was imminent, and knowing that something hot to eat would calm Juliette down, Donna requested a hot meal from the flight staff. She was told that only first class passengers received hot meals, but that they could offer her a cold sandwich.

Donna and her husband explained what kind of acting-out behaviour Juliette might go into if she couldn't get a hot meal, including that she might scratch lash out and scratch. The crew eventually brought a hot meal from first class, which calmed Juliette down. But not long after, the plane landed in Salt Lake City, and Juliette Beegle and her family were escorted off the plane. They were rebooked on another carrier (presumably at no cost to them) to continue their trip. Read more here

Juliette Beegle - The Discussion

The discussion that I've been watching about this has been very interesting. There's been acknowledgement among most of the participants that airlines in general seem to know very little about good (or even adequate) customer service for disabled people. As people who work outside the industry (most of us, anyway) we don't know what kind of disability training airline employees get, but there are enough examples of it being seemingly absent in their dealings with disabled people that definitely make ableism in the airline industry a trend. Airports are becoming a bit more responsive to challenges involved with autism and flying by offering "dry runs" through airports for families, to help autistic family members to see what's involved with flying and to help the rest of the family fine-tune the plan for handling the trip through the airport, but there's still a long way to go.

There was general agreement that the captain and airline staff overreacted.

However, even from some participants that said this, there was another perspective.

For safety reasons, because of the age we live in, airlines are very cautious about everything right now. A woman who did have some experience with the airline industry pointed out that even a small request that deviates from normal routines, like serving a hot meal to a passenger that doesn't normally get one when meal service isn't on, keeps the staff from performing other functions that they need to be doing at that point in the flight and sets a dangerous precedent of "You made an exception for that person - why can't you fill my special request?"

As well, the family basically threatened that Juliette Beegle may become violent if she didn't get what she want. Autistic or neurotypical, that may have been a risk that the pilot felt that he/she couldn't take. After all, Donna said that Juliette would be okay if she got a hot meal, but what if that wasn't the case? What if her frustration continued to escalate and she actually did scratch another passenger?

But, as another person asked, was it reasonable of the parents to expect that the airline could produce hot food for Juliette Beegle on a dime? Knowing that hot food was what could calm Juliette Beegle before she got to the point that she scratched, was it not up to them to either make arrangements with the airline to have use of the microwave and bring something on board that could be heated up, or to carry food on board in a container that would keep it hot the length of the flight?

Those sorts of questions need to be asked when any sort of person with special needs is traveling by air, not just an autistic person. I think it's reasonable to expect disabled passengers to ask themselves, "What if there's a chance that, due to my disability, I need something in the air that the staff may not be able to provide?" and to either do what they what they can to bring it on board (admittedly more and more difficult due to carry-on restrictions) or to call the airline prior to the travel date, explain the requirement, and see what can be worked out.

No one can plan for everything, of course. But I don't think that in the moment when everyone's guard is up is the moment to start explaining the finer points of autism and making what can come across as threats, as one of the passengers on Juliette Beegle's flight talked about:

"Really I saw it as a threat to the airline and the flight attendants to say, 'Well if we don't get this, this is what's going to happen,"

It's an interesting perspective.

Juliet Beegle - To What Extent Do Airlines Have the Duty to Accommodate?

Should airline disability training include at least enough on autism so that if flight crew are alerted that acting-out behaviour is imminent and there's something simple that they can do, like give a hot meal to a person that normally wouldn't get one, that they should do it?

I think so. That's pretty basic stuff. If the pilot and crew had received some autism training, they might have tried the first alternative suggested by the people who knew Juliette Beegle best sooner, seen her calm for a longer period and been satisfied that she was going to stay calm, alleviating the need to land the plane.

However, airlines need to take the potential for physical violence from anyone seriously, especially in cases where they can't help so easily. I think that the emergency landing and deplaning the family was probably an overreaction in this case, because Juliette Beegle's parents were there to talk about how she normally doesn't have issues with flying, how this trip had been different because she hadn't eaten beforehand, and could vouch for how a hot meal generally calmed her - it wasn't as if this was a passenger traveling alone who said, "I'm anxious, I need a hot meal or I might scratch people" with no other information to inform their decision.

It comes down to that idea of balancing everyone's rights, which isn't always difficult to do - but sometimes it really is.

Juliette Beegle - Do Disabled People Have a Responsibility?

I thought about this a lot.

I think that disabled people (or caregivers) need to be mindful that we have to know what it is that we need to function optimally and have a personal plan, to the greatest extent possible, for the times for the times, right or wrong, that we may not be able to get what we need. I think that this is part of disability empowerment.

We also need to know how to identify when the way that people, trained or untrained, treat us crosses the line into unacceptable. As we saw from this case, sometimes you can make an argument that a bad outcome is due to an institution's decisions, sometimes you can argue that it was due to the disabled person's decisions (or their caregiver's), sometimes you can argue that it's both...but sometimes it's very clearly the institution's (see this post by William Peace for examples involving airlines).

The discussion I was following on Juliette Beegle's story got a lot into blame, but I don't think I like looking at it like that. I think that there are lessons to be learned from it for the airlines and for travelers.

Monday, 18 May 2015

So...it's been over a month since I've been here, for a variety of reasons. It's not like there hasn't been anything happening that needs or deserves comment (notably, the reelection of the Tory government in Britain under whom the disability support system was so ravaged by cuts that the UN investigated at one point), but it's been a matter of time, and energy, and the feeling that I'm saying the same things over and over again and ultimately boring people. But I saw this story last week about a disabled woman and her experience at a Qdoba fast food restaurant in Louisville, Kentucky (and a young man named Ridge Quarles) that's roused me.

I saw the video, which is now "going viral" and the accompanying story on Huffington Post's "Love Matters" page. Obviously meant to warm the heart and inspire the spirit, the story's headline was "Qdoba Worker Feeds Customer with Disability, Reminds Us to 'Help Someone Every Day'."

Ridge Quarles, an Qdoba employee at the time, is the article's main focus. But the article is also about one of the restaurant's "regulars", a woman that uses a wheelchair and travels to Qdoba by what sounds like a city-run wheelchair transit bus. Ridge Quarles says that she's been coming for 5.5 years, often enough that the staff knows what she'll order, and that she's told him that the restaurant is his favourite place. He's being lauded because after getting her set up at a table one day, she asked Ridge Quarles to feed her, and he did without hesitation. Another customer, David Jones, was moved by the gesture and decided to film it.

After all, who would take the time to help a disabled person who can't eat by herself? This must be an extraordinary young man.

Or, you know, a human being who values helping other people when they need it. Despite the comments on the article lamenting the lack of people like that, I know a whole lot of them, and they don't get a newspaper article every time they do a good deed. However, because this woman is disabled, Ridge Quarles' action becomes inspirational.

As one of the commenters points out, this is inspiration porn. Even though it's by no means bad to give assistance to anyone, disabled or non-disabled, that requests it (as long as you're sure that your assistance isn't actually going to hurt, like if you're asked to do something requiring training that you don't have), the message of this article is, "Go out and make your day better by helping someone in need, like this disabled woman."

But we're not there to help you feel better about yourself. We are people with fully-formed lives and stories and complex needs, and it's not inspirational to reduce this woman to an object on which to be acted.

Ridge Quarles and the Objectification the Unknown Qdoba Customer

And for those who would argue that this disabled woman was not treated as an object, let's unpack this a little:

No one, including Ridge Quarles, appears to know the woman's name, despite the fact that she's been coming to the restaurant for over 5 years. This account says that her name is withheld for privacy reasons, but all the other ones that I looked at said something to the effect of "We don't know her name or her story". She comes to the restaurant regularly - how hard would it have been to try to find out for the story, so that she can make a decision about whether she not she wants to be named, or to give her perspective if she desires?

Despite the fact that no one knows her name, no one has any problem with using a video that someone filmed presumably without without her knowing it (some accounts go so far to say that the video was secretly filmed) of someone assisting to her to eat in a newspaper article without her permission, as if she's a prop in Ridge Quarles' "it-feels-good-to-help-people-go-try-it-today" story.

She can't even get into the restaurant until an employee notices her and opens the door for her, or a patron notices her and holds open the door. Where is the electric door in this restaurant? Has anyone on staff at this particular Qdoba questioned, on the basis of her not being able to get into the restaurant, whether an electric door needs to be put in?

Is it just when she asked for support with eating that anyone who worked in the restaurant, after 5 years of her being a customer, noticed that she needed support with eating? If not, did anyone ever think about what responsibilities they had as people observing something concerning about the care of a vulnerable person? If not, how did they miss it?

Not particularly tough questions...just ones that should restaurant staff, including Ridge Quarles, should be asking after serving for 5 years a disabled customer who should have some assistance and arrives with none, particularly the one involving whether there's a way for her to actually get in and out of the restaurant.

Now, obviously those bullet points assume the best of the woman and the worst of the restaurant and its staff, which might not be the case. Perhaps Qdoba campaigned headquarters tirelessly for an electric door, or didn't notice that she needed assistance to eat because she'd never showed any signs that she needed it. Perhaps Ridge Quarles actually does know her name and *is* refusing to give it out to respect her privacy. The damage was arguably done when Jones put the video online, but that's not Ridge Quarles' fault.

The reporting seems murky, and varies across websites, which is problematic in itself. Still, stories like this also should prompt us to ask how a person who (going by what we read in the story) needs some very basic accommodations and/or support ends up going without when out at her favourite restaurant, regardless of who is supposed to provide it.

Discussion Trends

And some commenters on the Huffington Post article did ask this. But people weren't interested in discussing it. Some were criticized for bringing it up and "ruining" the story. One disabled commenter was asked, "Bitter much?", prompting a comment from another about how quickly the public perception of disabled people changes from pity to anger when we start to assert ourselves.

All I know is, my first reaction after reading the story was to cringe and think about how terrible cuts to services really must be when a disabled woman who needs assistance to eat has to go to restaurant alone and hope that someone will 1) Help her to get inside 2) agree to help her to eat, and how icky it is that a piece about those issues becomes inspiration porn.

Don't get me wrong...I'm glad there are people like Ridge Quarles in the world, who happily help others in need without expecting anything in return. But I'm also sorry that there's a need for them, and that important aspects of those stories get over-looked because they're not "inspirational".

When I discuss a video, I generally embed it. But, granted that it's so difficult to know from news accounts this woman's feelings about being in the video, I've chosen not to this time. It's easy enough to find.